Earlier this year I was contemplating suicide. I hadn’t planned anything, but I thought about it constantly. There didn’t seem to be any point going on without more than 2-3 hours of sleep, or even the ability to lie in bed and rest. After 11 years on Ropinirole, I’d successfully come off, but that still left me with unbearable RLS, which Pregabalin was unable to touch.
I thought I’d come to the end of the road, and no specialist I saw (and had paid hundreds of pounds for their expertise) had a solution. Some were clearly of the opinion that I needed therapy. One wrote that I might have Borderline Personality Disorder. The reality was that I was becoming increasingly depressed and hopeless due to sleep deprivation.
I’d convinced myself there was no magic bullet/pill/solution. In fact this is what most consultants told me.
Then, in the middle of a particularly terrible night back in January, I stumbled upon this forum, and everything started to change. First of all, here were people who understood what I was going through, and weren’t dismissing me as deluded or beyond help. But more than that, they knew about studies coming out of the US where, depressingly, RLS research is at least a decade ahead of ours in the UK. Studies that showed unequivocally that low-dose Buprenorphine and Methadone do not lead to addiction (any more than most pharmaceuticals can be said to lead to ‘dependence’), or even tolerance.
I spent the next few months trying to obtain a prescription for Buprenorphine. Many of you will have read my story on this forum, so I won’t repeat it here. Suffice to say that, in May, I took my first pill, and haven’t had more than a very occasional sign of RLS since. My life has done a 180 degree about turn, and I feel human again. I’m still struggling with insomnia, I think because my body has forgotten how to sleep in the decade I took Ropinirole. I didn’t realise I was augmenting from very early on, and just thought I’d developed insomnia because of the menopause. But at least now I can lie in bed all night and REST.
I will never cease to marvel at how wonderful it is to be RLS-free, and my heart goes out to everyone who is still battling with uneducated doctors and specialists who refuse to accept that patients might know more than they do on occasion. I will be thinking of you all this Christmas.
Next year I plan to continue writing letters to GPs and NHS neurologists. I’ve managed at least to generate some engagement from my local practice, even though I seem to be going round in circles between them, the NHS neurology team and the local formulary.
But really this post is to say thank you to Joolsg , without whose support and generosity I would still be in that hellish place. Jools and SueJohnson work tirelessly on this forum (along with several other wonderful people), and I’m sure I won’t be the only person wishing you both a peaceful Christmas. No one deserves it more.
Written by
Claire_1c
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That's a wonderfully British understatement. I hope your story is also one that will give courage to others currently on DAs. A very Merry Christmas to you.
Thank you for writing this, Claire. I am so glad you found help, both here and locally with someone who dared to step up and prescribe buprenorphine for you.
It struck me - once again - what you described about your feeling of hopelessness that is mistaken for depression or any type of disorder. I have been there. Why does it seem easier for healthcare providers to put a disorder stamp on patients that feel hopeless, rather than listen carefully and emphatise? In situations like that a sincere ‘how can I help’ question (yes, I watched the New Amsterdam series) followed by acting upon it, would make a huge difference. Even if the healthcare provider fails to find good help.
I am so glad you found this forum Claire_lc and your words mean so much..The reason I keep screaming into the void and keep on going.If we all keep on at our GP surgeries and write to our hospital neurologists with the latest research and evidence, we will change some minds and help another poor patient whose GP refuses to listen.
Claire, what a lovely post. I am so glad you are on the other side of this, and I really can't thank you enough for what you have shared as well as the support that you are offering me and others. This forum truly is a life saver, and I am also exceptionally grateful for it. Without it, I'm sure many of us would feel utterly helpless and desperate for support and understanding. So thank YOU Claire and Joolsg , SueJohnson and many others who have taken the time to respond so diligently to my posts, questions, etc.
My sentiments also. The advice on this site about Buprenorphine has been a life saver. Thank you for such a well written post. I hope 2026 is good for you and the residual insomnia from the past sleep disruption ends.
Claire, Your insomnia is likely caused by the buprenorphine (Bupr). It's a common side effect for this drug. If you are taking Bupr at night before bedtime you will struggle to get to sleep forevermore. Bupr decreases Adenosine which is a "chemical" in our bodies that has multiple functions. But know this: adenosine helps regulate sleep and lowering the adenosine level creates a feeling of alertness and prevents or delays the onset of sleep. What I do is take the Bupr earlier in the day. I take 4 mg between noon and 1400 then another 2 mg around 1600. This time frame allows me to get to sleep shortly after midnight providing I haven't had any caffeine. Each person needs to experiment with their dosage times to find out when it works best for your sleep times. As your body eliminates the Bupr your adenosine level will begin to return to normal. The closer is gets there the better you will be able to sleep. Note: you may have other issues which contribute to insomnia. As others suggest, discuss all the possible issues related to insomnia, learn all the tricks to get a good nights sleep and it will come to you once again. Best of luck.
There are a lot of us out here that wish we could write so eloquent a letter. A very Merry Christmas, Happy Hanukkah, and peaceful thanks to all of you.
Well done with your post which I want to use to wish all those RLS forum "leaders" a happy and peaceful Christmas and a 2025 which revels significant progress on all our efforts to make the medical profession sit up and take time to understand RLS.
So to Joolg, Sue J, LotteM, Twitcher707, Madlegs1 and many others who have helped me to "win the battle" if not yet the war over RLS
Thank you for sharing your story! Merry christmas to all the gpod souls here and let there be peace on earth!
I just want to repeat that you can conquer the insomnia. First, rule out sleep apnea. I do npt snore and trued to refuse to be tested but I had severe sleep apnea along with severe RLS. After both of those were controlled I still had insomnia. CBX sleep gummies solved that for me. Good luck to you!
Like others I was thrilled that you now have the chance to live a normal life and moved by your eloquent post. I too also wish to add my thanks to Joolsg, Sue Johnson and the many others that have helped so many of us fight the battle. My fight is not over yet and I feel particularly frustrated and vulnerable at the moment, but I will not stop battling on until I find a Neurologist /GP who will prescribe Buprenorphine for me.
I wish all members peace, sleep, good health and, above all, we eventually get the help we know is out there in 2025.
Dear Claire, Wow! What a true story. I've just had 7 hours of sheer agony and torture again last night due to RLS and I'm on the same 4 x 0.08mg dose pram nightly but I've just had a very rapid response from the 2 amazing people Joolsg and Sue Johnson. Aren't they brilliant 😃Kind regards from Hollygreen
Hi , lovely to read another happy ending thanks to this amazing sight . My story is pretty identical to yours. I have just commenced 25mgs Pregabalin at night , it has helped my insomnia , anxiety and appetite which is great , sadly it hasnt helped with the hot / cold sweats but still you cant have everything ! Had a job getting Gp to prescribe but won eventually . Good luck
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2 questions- Does buprenorphine give you insomnia?! Also what’s the best type to ask for?
Dipyridamole didn't work for me
Life after dopamine agonists
Round 50?
New here—coming off ropinirole 
